ME/CFS funding report

Posted on 29 Sep 2016

A report into the funding of ME/CFS by major institutional funders over the past decade was unveiled today at the UK ME/CFS Research Collaborative (CMRC) conference in Newcastle (read the report; pdf). The CMRC had commissioned ÜberResearch to interrogate its Dimensions database for relevant funding information on ME/CFS in comparison with other diseases. Surprisingly, there had never been an analysis of research funding into ME/CFS, so a clear picture of the levels of funding provided, how these have changed over time, and how they compare with funding for other chronic illnesses is long overdue.

Overall, the report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies. It shows that research funding has been low-level and patchy, and highlights the need for increased investment, particularly in high-quality studies of biological mechanisms and treatments. The low level of investment by major funding agencies is particularly shocking given the scale and impact of ME/CFS on individuals and society. Around 250,000 people in the UK have ME/CFS, which is at least as disabling as multiple sclerosis and congestive heart failure. Many more people – carers, children and family members – are directly affected by the illness each year. The economic cost of ME/CFS was estimated at £6.4 billion per year in the UK some years ago, and this figure will certainly have increased since.

As the Dimensions database contains data from institutional funders only, the report does not include research funding by ME/CFS charities. While this can be considerable in relative terms – ME Research UK has committed £1.5 million in its lifetime for more than 40 studies in UK and overseas (see our plain English overview of funded research) – the amounts charities can commit are small in real terms compared with the larger sums available to institutional funders such as the MRC and the Wellcome Trust in the UK and the NIH in the USA. It is these institutional funders who need to step up to the plate in a major way, and who have been failing in this task over the past decades, as the report shows. Fortunately, based on this report, and the scientific discussions at the conference, the MRC says it will review its ME/CFS highlight notice, the mechanism by which researchers are alerted to areas that are a high priority for the MRC, with a view to encourage more applications.

As Prof Stephen Holgate says in the Forward to the report, the hope is that it will prove to be a foundation for larger mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness. He continues, “This report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies. I am delighted that the MRC will now review its highlight notice as a result, and hope that the report proves to be a foundation for other mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness.”